Back to The Defiant Few ←The Treatment Worked. Now I’m Afraid to Outearn It.
When treatment gives part of your life back, the system can make using that life feel like a threat to the care that restored it.
Give a chronically ill person an effective treatment and everybody celebrates. Then hand him a benefits manual and ask how much improvement he can afford.
That is the part nobody puts in the success story. My Vyalev pump changed my motor life in ways I do not minimize. The falls stopped. The freezing stopped. The brutal cycle of waiting for the next dose to rescue me stopped. After thirty-five years with young-onset Parkinson’s, I could look at paid work again as a real possibility instead of a motivational poster somebody else wanted me to admire. Then possibility brought paperwork, income rules, Medicare questions and the fear that earning more could threaten access to the treatment making more possible.